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Sunday, 1 March 2015

No Guidance yet- nice one!

The time has come for NICE to make their decision, and it seems they are stuck. They have decided more research is needed, thanks to the comments of the handsurgeons (thanks BSSH!) and the patients (meaning: all of us!) who did not want them to reject collagenase. This is good, it means for now it is still up to individual PCT's to decide but they are allowed to accept it, so we still have a chance of getting the treatment that suits the contracture (not all contractures are suitable, some are better treated with surgery).

I am relieved, though I see more work on the horizon for us. But I am sure it will be worth it.

I have decided for now to give up on the idea of doing a science part for the website, my anatomical drawings were not quite up to scratch and my understanding of the affected pathways is decidedly below scratch, so I will look for a few good pages already on the web and seek permission to link to them. I'm sure I will find something.

Designing a new logo has hit the same snag- may lack of drawing talent. Time to think of other ways to get a good logo!

Gary and I are busy planning for the Dupuytren's Conference in May, we have booked accomodation and I have booked my flight, progress is being made! Gary will be presenting the conclusions drawn from the survey he posted a few months ago. I will be trying to gather as much information as I can about recent research and new ideas. And we will have a good time while we're at it!

Our website has been down for a day (or rather: the server was down) but thanks to Richard Proctor of Waveney.com who hosts the site and spend his evening after work sorting it out, the problem was sorted within a day. Good going!

That's all the news for now. Take care of your lumps and cords, be healthy!